Thursday, April 16, 2009

So... back the the phone call!Dr Cedars told about a NEW, EXPERIMENTAL fetal surgery that was just starting to be done here in the United States. He gave me three areas to focus on, and one phone number to call. I was at work and I work where the only computers are the ones that run our sewing machines so I was unable to search anything, I just made the calls cold. In retrospect this was probably the good Lord hard at work because if I had read the things I read that night before I made the calls, I probably would never have made the calls...#1, Tennessee...I called the hospital there had been doing the surgery for about 6 months. They had done somewhere around 25-45 surgeries, with varying degrees of success. They did the surgery late in the pregnancy so if anything went south the baby would still have a viable life. This sounded good in some ways, but through further research it was actually bad. See there were so many complications with the surgery that a BUNCH of these babies ended up being born very premature with lots of preemie issues, and the surgery was so recent that it didn't have a chance to work very well. But the BIG downfall to this hospital is that it was a for profit hospital and they wanted a HUGE sum of money UP FRONT, and would not even bill insurance little lone work with them. I can't remember the amount, but I do remember saying to the Lord "HOW IN THE WORLD???" They recommended I call #2#2, Children's Hospital in Philadelphia, aka CHOPs. The secretary here was VERY helpful... in some ways. She had good information about the surgery, which I hadn't really got from #1. She had the compare and contrast on doing the procedure early in the pregnancy vs latter. She told me that CHOPs DID work with insurance companies and was a non for profit teaching hospital so there were options on the money end. And she had some very promising statistics from CHOPs doing the procedure. She was calming to talk to and sweet as can be. BUT she had some REALLY bad news too.... her fetal surgery team was out of the country and would not be back before I reached the cut off in my pregnancy for them to do the procedure. See, I was already 19 weeks.... and there was no time to get there, have all the pre surgery work done and have the procedure before the 22 week mark that they stopped during that time. Especially with her team out of the country. Talk about a roller coaster... just when I was getting excited that there might be a way, she told me there was no way! I thanked this sweet heart of a secretary and just before hanging up I mentioned, "I have heard of #1 and you guys, but also of a rumor of someplace else, know where else by any chance?" Her answer shocked me beyond words! She said, "There is another hospital, but I don't know which one, I just know that they are in California."

CALIFORNIA????? Are you kidding me?? I have been on the phone for the last hour with all of these East Coast hospitals when there was one RIGHT HERE IN MY STATE??? I HAD to find out who it was.... NOW! So back I went to wonderful Dr Cedars, but he didn't know. His guess was Loma Linda in southern California. So I called them, no dice. But they thought it was a hospital in the Bay Area, their guess being Stanford. So I called Stanford. By this time I was really good. Call information for the hospital's main number. Call the operator and ask for the fetal surgery department. Get whoever answers the Fetal number and TALK REALLY FAST! :) The key was not letting them say "I will give that info the the proper person and they will call you back." The key was also keeping whoever talking as long as possible to pull as much information as possible from them. After my third call in 10 minutes to the Stanford Fetal Surgery department someone else answered. She said, "oh no that's not us, it's UCSF, here let me get you the number." Thank you Lord for that angel!!!!

So late on Friday afternoon, on tax day no less, I reached Jodi, a nurse coordinator in the Fetal Surgery Department at University of California at San Francisco. Jodi was sweet as can be and terribly helpful too. Yes, they had done a few of the type of surgery that I was asking about. Yes, they had had varying degrees of success. Yes, I could come check it all out. But as we started talking I felt her pulling back. I finally asked her why she was hesitating and she had news that stopped my heart. It seems that as a team they had decided that they would only do the procedure to the 20th week of gestation in a pregnancy... and I was already in my 19th week! I took a BIG gulp, said a quick prayer, and asked her if I could tour the department in the morning! Come hell or high water I WAS NOT letting the Lord bring me this far to scare me off now! She laughed at me, and said beings as tomorrow was Saturday, that maybe we should wait until Monday for the tour :) That afternoon Jodi set up a TON of appointments for me all day Monday, and gave me a list of directions and things to bring. You see, if I decided to do the procedure I most likely wouldn't have time to come back home before hand....

I left work then with HOPE and lots of things to do, not the least of which was break the news of what I had spent the morning setting up to my husband.... Yup, I totally had forgot to call him in all of this! Monday April 17th 2000 would become a day that my husband nor I would ever forget.... I had A LOT of those days in April 2000!